The online Facebook community of CRPSers has recently been asked to write their own inspirational stories for possible inclusion in an “Inspirational CRPS Story Book”. I chose to write about the Tai Chi rather than the academia simply because physio’ is a need that we all have as a crucial part of our pain management, and the possibility that it could be less of a chore and more of a joy is pretty darn cool! 🙂
I have been advised by the lovely lady putting the book together that it’s fine for me to post this on my blog for my readers to see. So this is what I wrote….
Inspiration is one of those words that won’t be pinned down. You can’t point at it and say “see, look… that is an inspiration” in the same way that you could point out a chair or the colour lilac. Okay, well you could point at something that you find inspiring and say that, but the person you’re talking to may disagree, or they may feel inspired in a totally different way.
And it’s not only a personal thing, it’s also an out-of-the-blue thing. When we feel inspired by something it is usually something that happens in a moment, or it’s crept up on us somehow and we become aware of it in that moment. It is a response that involves our emotion through personal interpretation. It often links in to our own joys and pleasures in life, our dreams, our morals, our hopes. Maybe we saw a picture that we found inspiring… perhaps it made us feel good about the world and want to do more good ourselves, or it inspired us to paint, or move home, or phone a friend that it reminded us of. Inspiration can come from anywhere and at any time because it comes from within. It is often sparked by something external, something we’ve seen or heard perhaps, but it can also be sparked from within – our own thought process can lead us to inspiration. Inspiration is so wrapped up in who we are and how we interpret what we see, hear and feel.
If someone says “you should try this…”, it’s not inspiring on its own. But if it sparks your interest, gets you intrigued, makes you feel inspired to do it, then that’s a different thing altogether from just trying it because someone said that you should.
If we are inspired to do something, if we are interested, motivated and involved in what we’re doing, then we are also more likely to see it through. Mind you, I say that as someone who keeps trying to find the time to get back into my artwork but failing to see it through. It’s not that I’m not inspired so much as that I don’t set aside time to allow myself the enjoyment of it because it takes up valuable activity time which I usually need to complete mundane tasks like cooking or washing dishes! I know what I want to paint, I just keep ending up crossing other things off my ‘to-do’ list instead. Being inspired is one thing, but making time to enjoy that inspiration is a decision that is easy to push away. I know from personal experience!
Just about two years ago as I write this I was inspired to continue with something new. Starting it was more owing to necessity, but feeling inspired to continue, now that’s the magical bit!
My CRPS story is a long one so I will not recount it in any length. It’s been nearly 14 years since injury and onset as I write this. It took 6 years and many medical roundabouts to get a diagnosis, and with no medical support or knowledge of the condition whatsoever it took me about 10 years from injury before I began to find out that it is much much more than ‘just’ the second most painful condition known to medical science (after terminal cancer of course <3). So suffice to say it includes screaming pain, wishes of no longer existing, loss of friends through their inability to cope with my new reality, having to give up work, using crutches, a wheelchair, lack of food and nutrition through inability to shop/cook/eat, waving goodbye to my future career that I was working so hard towards, severe muscular atrophy, and even loss of family once the autonomic and neurological changes hit their fastest downward slide yet.
I could bore you with details. But if you’re a fellow patient then you know the score already, and if you’re not then I think this book will contain enough detail already. Living with a progressive health condition strips away your former life and even many of the people that were in that life. It leaves you with nothing but yourself, and it is easy to wonder where even that went until we begin to separate who we are from what we used to do and who we used to know. I was me when I was able-bodied and pretty healthy, and I am still me now that I am chronically ill and disabled, it’s just the way that I express my ‘me’ which has changed. ❤
So, I started a class more owing to need as I had been unable to continue with any gym physio’ sessions for two years since my additional autonomic dysfunction issues had set in (a common co-morbidity in CRPS patients). The lack of gym physio’ was taking its toll on my body and the extent of symptoms and two years of backsliding whilst continuing to deteriorate made it clear that I wasn’t going to get back to the gym anytime soon. My boyfriend came home one day with some information about a Tai Chi class that had recently started up at the gym that I was still a member of.
It made sense to try it. I’d always wanted to learn a martial art and Tai Chi is a slow-mo version! And from a physio’ perspective it ticked a lot of boxes – gentle, slow but weight-bearing and it is good for balance, core stability, leg strength, confidence of movement, stride length etc. All good reasons to give it a whirl. So I went along and tried it. And I really enjoyed it. The teacher was also trained in fitness as well as having seriously good qualifications, experience and multiple trophies from around the world. I fell on my feet there and no mistake!
I loved the first lesson and I felt inspired to continue. The more lessons I attended the more inspired I felt. I found that Tai Chi is harder to start off with because that’s when we’re learning the basics, and as I took on board more of the principles of how the movements worked the easier and more enjoyable it got.
It no longer felt like it was the ‘other’ option to my usual gym physio’, although initially I was hoping that I would still get back to the gym eventually. Not that I would have given up the Tai Chi, mind you. It even turned out that I’m not half bad at it.
So here I am just over two years later and I now have two national gold medals at beginners level for my Yang style Tai Chi! I am currently learning Sun style and sword Tai Chi as well. I adore my new physio’s and intend to keep at it into my old age as the longer I can remain active the longer I can better manage my pain levels into later life. I would love to still be able to do a slow mo’ crescent kick in my old age! 😉
The Tai Chi classes were cut at the gym so, seeing as the only class I attended there anyway was Tai Chi, I ended my membership there and moved over to my teacher’s martial arts club. Next year I’ll be at intermediate level and I fully intend to compete again at the nationals because a) I enjoy it so much, b) it’s wonderful to achieve something when so much of the time I am so limited and c) I’m proud to be performing Tai Chi amongst able-bodied competitors despite being chronically ill and only having small amounts of physio’ time in which to do it.
Becoming ill and becoming disabled takes so much away from us, but I’ve found that what it has really done is allow me to explore another skill set that I never knew I could have. We can achieve so much more than we realise. The key is trying something out and seeing if it inspires us. Sometimes it can open up a part of what makes us who we are that maybe we thought we had lost – there it is after all, it was still there all along,… I am still me in this new form.
If you’d like to write your own inspirational story, or perhaps a friend or family member would like to do so,… yes, I did say that… whether you are a CRPS patient or a friend or family member of a CRPS patient then feel free…. all stories are welcomed and 50 of them will be published in the book (you can choose whether to be named or anonymous). Here’s the Facebook page for the endeavour… https://www.facebook.com/InspirationalStoriesForCrpsRsd?fref=ts and email your story to RSDCRPSInspirationalStories@yahoo.com
No story is not worth telling. And writing this doesn’t have to be a daunting task because it is simply a chance to write about something which has helped you through. Maybe something has inspired you to keep at a hobby, or keep up with the physio’, or perhaps to study, or start something new, or…. Maybe you are a friend or family member who wants to write about how what inspires the CRPS patient that you know, or how you are inspired by them / their attitude / their determination / …, or how you think that they inspire others… and so on. Whatever it is, there is someone out there who will be inspired by your experience, and that’s what it’s all about, x
The key theme is ‘inspiration’.
Flex your typing fingers people, or get your favourite pen out, and have a little jot-stuff-down moment. Don’t be afraid to write, it’s a wonderful experience, and there will be an editor on hand so if you’re nervous of the brain fog kicking in or the kids/pets/postie interrupting your flow, don’t worry – it’s the story that’s the important bit, not how you write it, x 😀
I’d love to hear your comments below. What do you think of this post, of the opportunity to write and share for the book, of the book idea itself… anything, I’d love to hear your thoughts. Big loves from me, x